Can anyone post their experiences with cluster headaches they suffer from, particularly frequency and THEIR symptoms they go there. I have suffered from migraines and have been diagnosed with them, I also was diagnosed with cluster headaches, but stuff doesn't add up. And I had a severe migraine that could all intent and purposes pass as a Hemiplegic migraine, but since those are rather rare, we'll just say, I had a really bad headache that could pass as a Hemiplegic migraine because it matched the symptoms a bit too perfectly.
Vascular constrictors don't really work too well, And I tolerate triptans less.. what does kinda work, for the ones that are being called cluster headaches, are painkillers and an increase of Oxygen intake. I cant lie down during one and I wanna keep moving around.. I cant sleep during one and it generally will wake me up if I am sleeping. 20mg of Norco doesn't really work, NSAID's wont work, not alone and not even at 800mg (ibuprofen), plus I have had stomach issues in the past that kinda rule those out at any dose..I am on calan 120mg sr, that is all I can tolerate of that, it does an ok job.. So, I am hoping to hear of other peoples experiences, I know these are kinda rare headaches, but, hey, I can still make the inquire. So, what's you say? (btw, thanks in advance)

Hi - this post was quite some time ago, so not sure if you're still out there monitoring this board, but I am hoping. Can you tell me more about the hemiplegic migraines? I started out with complex or complicated migraines years ago, and have been suffering terribly for last 6 months with something that seems just like this (from what I've read on the web so far about hemiplegic)... Can you tell me if you ever tried Midrin for it and did it help? This seems to be only thing to keep it where I am not in the fetal position for the majority of the day, and I am wondering if sometimes the meds that help also help in diagnosing the problem. Hope you or someone else who knows about this can answer. thanks- Terca

Quote:

Originally Posted by 66Brian

Can anyone post their experiences with cluster headaches they suffer from, particularly frequency and THEIR symptoms they go there. I have suffered from migraines and have been diagnosed with them, I also was diagnosed with cluster headaches, but stuff doesn't add up. And I had a severe migraine that could all intent and purposes pass as a Hemiplegic migraine, but since those are rather rare, we'll just say, I had a really bad headache that could pass as a Hemiplegic migraine because it matched the symptoms a bit too perfectly.
Vascular constrictors don't really work too well, And I tolerate triptans less.. what does kinda work, for the ones that are being called cluster headaches, are painkillers and an increase of Oxygen intake. I cant lie down during one and I wanna keep moving around.. I cant sleep during one and it generally will wake me up if I am sleeping. 20mg of Norco doesn't really work, NSAID's wont work, not alone and not even at 800mg (ibuprofen), plus I have had stomach issues in the past that kinda rule those out at any dose..I am on calan 120mg sr, that is all I can tolerate of that, it does an ok job.. So, I am hoping to hear of other peoples experiences, I know these are kinda rare headaches, but, hey, I can still make the inquire. So, what's you say? (btw, thanks in advance)

I can tell you that i was diagnosed so far with migraine and with cluster headache, I have not looked into any further than what I read up about on hemiplegic, It was the only thing that fit perfectly in how it acted when I had a what I thought was just a migraine, I didn't actually pay much attention to the week long aura i was having.. Once the headache hit, I had it for 2 days, I took a lot of painkillers for it and rode it out, once the main event hit, as in the worse part of it hit, and passed, ALL cleared out and it passed.. To answer your question, I did take midrin, it worked better on me if I took it with norflex.. It allowed me to function fairly normally.. but it didnt seem to work well on cluster type headaches.. Taking daily dose of calan, and if I have a headache, a moderately strong pain killer works better.. midrin is tolerated better than triptan's and ergot preps, but, it's still a Vascular constrictor. I get severe muscle cramps with ergot.
My understanding is you are not really suppose to take a vascular constrictor if diagnosed with hemiplegic, unless of course your doctor ok's it.. if in doubt, ask them.
With cluster headaches, they hit, and last on 1-3 days and off, then eventually they stop, you get a remission so to speak with them.. and mine did that about a week ago.. lucky me, since I was about out of a prescription, I had hoped would last longer than it did.. short version, yes, I have used midrin in my past, yes it did work.. It worked best when taken with norflex.(maybe that was just me) but it didnt work 100% on all them.. I just wish it was mixed with a stronger painkiller.. Im grateful the medication exist, just not patient enough to wait for it to kick in when Im in excruciating pain.. I don' t think that was the help you were looking for.. if you have not recently, see a neurologist that primarily specializes in headaches.
What I know of a Hemiplegic migraines if you have symptoms of one see your doctor, they wanna rule out possible stroke. preventive meds calcium channel blocker or an anticonvulsant.. Good thing, i know it doesnt sound it, but they are seeing migraines as more than just a severe headache pain, what that means, they know more, they study more, they learn the best way to treat it.. AND everyone is treated differently, meaning what works for one might not for another..

Symptoms of hemiplegic migraine include:

- Severe, throbbing pain, often on one side of your head
- A pins-and-needles feeling, often moving from your hand up your arm
- Numbness on one side of your body, which can include your arm, leg, and/or one side of your face
- Weakness or paralysis on one side of your body
- Loss of balance and coordination
- Visual aura, such as seeing zigzag lines, double vision, or blind spots
- Language difficulties, such as mixing words or trouble remembering a word
- Slurred speech
- Dizziness or vertigo
- Nausea and vomiting
- Extreme sensitivity to light, sound, and smell
- Confusion
- Decreased consciousness

With hemiplegic migraine, the aura can be more severe and last longer than with other types of migraine with aura.

Had classical migraines for 30 years before the cluster headaches started. I have suffered with th for the past 8 years. I have finally found the combo of meds that work... Ciproheptadine and verapamil! Never even had to start the verapamil, the ciproheptadine stopped the cycle in 2 days!!! Good luck! Lisa